Episode 16: Fibromyalgia in Children with Dr. Melissa Congdon

Fibromyalgia in Children with Dr. Melissa Congdon

How to Recognize Pediatric Fibromyalgia and What You Can Do About It

  • Does your child wake up crying or feeling fussy without illness or a known cause?
  • Does your child come home from school some days exhausted, some days not?
  • Homework: Does your child have trouble remembering what they have studied for a test?
  • Sports: Does your child perform well on some days, but on others they have trouble keeping up?
  • If your child has a first degree relative with fibromyalgia, they are 8-1/2 times more likely to develop this syndrome themselves. Might your child have fibromyalgia?

The Mayo Clinic reports 2-6% of school aged children in the U.S. have fibromyalgia. Conservatively, that means 14.8 million kids struggle with fibro fog, chronic pain and a host of other confusing and debilitating symptoms. Dr. Melissa Congdon joins us with the message that pediatric fibromyalgia is very treatable, meaning you and your child can enjoy their time as children. Learn how getting an early diagnosis makes a huge difference in helping your child succeed at school, in sports and beyond.

About Dr. Melissa Congdon

Dr. Congdon practiced general pediatrics in Glendale and Mill Valley, California for 18 years until severe fibromyalgia symptoms forced her to retire from medical practice in 2008. Her diagnosis led her to a comprehensive study of the various treatment options for fibromyalgia. Using a combination of diet, exercise, acupuncture, supplements, medications, the guaifenesin protocol, and other modalities, she was able to return to medical practice in 2009, and chose to become a fibromyalgia consultant. She trained with fibromyalgia expert and author Dr. R. Paul St. Amand, Internist, Endocrinologist, and Associate Professor at the Harbor UCLA Medical Center.

Dr. Melissa Congdon is board certified in pediatrics, and sees children and adults in her fibromyalgia and pediatric consulting practice.

Links & Resources

Note: This episode’s show notes and transcript contain affiliate links. If you click through and make a purchase, we will likely receive a small commission. Read about what we do and don’t promote here.

  • Get a free copy of Tami’s book, Take Back Your Life: Find Hope and Freedom From Fibromyalgia Symptoms and Pain at FibromyalgiaPodcast.com/books.
  • Dr. Melissa Congdon chose to focus on fibromyalgia medicine after her recovery from fibromyalgia symptoms, and caring for children is her first love. Dr. Congdon has 18 years of private practice experience as a board certified pediatrician, an undergraduate degree in psychology, and the experience gained in raising two children of her own. Dr. Congdon offers pediatric consultations to families and since 2009 has treated hundreds of adults and children with fibromyalgia. You can reach out to her at MelissaCongdonMD.com.
  • Inspired by her fibromyalgia patients, Dr. Congdon produced a 30 minute documentary, Fibromyalgia: Getting Our Lives Back—Success Stories on the Guaifenesin Protocol which she has made available for free online for everyone to learn more about fibromyalgia and this treatment option.
  • In 1999 Dr. St. Amand, an experienced endocrinologist and UCLA assistant clinical professor, published his effective protocol for reversing fibromyalgia, based on nearly half a century of research, including his own experience with the disease and that of hundreds of his patients. This third edition of the book (affiliate link) offers the latest research and Dr. St. Amand’s breakthrough program that uses guaifenesin, an inexpensive, safe, and increasingly available medication that can help reverse the disease. The authors have seen symptoms eliminated and normal living restored in an astonishing 95% of the pediatric fibromyalgia sufferers they treated with guaifenesin.
  • We have designed a Symptom Observations worksheet to help you track your child’s symptoms to make it easier to report during your visits with medical providers. Access all of our worksheets using this link.
  • Below you will find both a full transcript and video of the episode, with the studies mentioned in the show linked in the transcript.
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Transcript

You are listening to the Fibromyalgia Podcast with Tami Stackelhouse, Episode 16. 

Welcome to the Fibromyalgia Podcast! I’m your coach, Tami Stackelhouse. 

Today we are going to be discussing a really important topic, which is fibromyalgia and our kids. We’re going to be talking about juvenile fibromyalgia, and we’re going to be speaking with a fibromyalgia expert who happens to also be a pediatrician, Dr. Melissa Congdon.

[01:15]  Before we get to her interview, though, there are a couple of bits of news that I want to do, including, first, a listener shout out. So, I love getting your reviews. I love getting your emails, letting me know how the podcast is helping you. Today I want to read one that came in on iTunes from “dancingwithfibro”. One of the reasons I love this is because of her name “dancingwithfibro”. I love that. I love the whole visual of that.

dancingwithfibro Podcast Review

So, first off – awesome name! Thank you. Also the review says, “Wow, I have been looking for a fibro podcast ever since podcasting became a thing. Thank you Tami for this gift. How do I submit for a free consultation?”

Thank you again for sharing that. You know what you said about “looking for a fibro podcast ever since podcasting became a thing”? That’s what I noticed when I was doing the research for this podcast. At the time, there really weren’t any active podcasts out there that were focused entirely on fibromyalgia that also came from the perspective of how you can get better, by interviewing the top doctors, researchers, coaches and advocates. So, thank you so much for your review, and for sending the love my way. Sometimes, when I do these podcasts, I feel like I’m talking in a vacuum, because there are no faces in front of me. So, I love it when you send those in.

[02:57]  The other thing that I wanted to celebrate with all of you is that as I record this, which happens to be July 2nd — last week we hit 10,000 downloads of this podcast. That was after 13 weeks. So… 3 months, 13 episodes, 10,000 total downloads. Now, 10,000 to some of you might sound like a lot. Some of you, it might not sound like very much. I want you to know this is a very big deal. That works out to almost 1,000 downloads per episode. To give you an idea, when you look at all of the hundreds of thousands of podcasts that exist out there on Apple Podcasts, to be in the top 20% of the all the podcasts that would be 1,100 downloads per episode.

So, we are almost in the top 20% of ALL podcasts that exist! That, my friends, is all thanks to you guys. Me making it is one thing, but if I did all the same stuff and didn’t have any listeners, we would obviously not have any downloads. So, I just want to thank all of you who have listened, who have subscribed, who have reviewed the podcast, and who have been listening, because without you I’m just talking to dead air. So, thank you.

[04:45]  And, please, please, let me know if there are any topics that you would love for me to cover, if there are questions that I can answer for you, or if there are any particular people you would like me to interview. This is obviously your podcast, because without you it wouldn’t exist. So, please, let me know.

Just go to FibromyalgiaPodcast.com, and you can use either the Ask the Coach option to submit your question to be used on an Ask the Coach episode, or just our regular Contact menu to just send a message. Thanks again for helping us reach that big landmark of 10,000 downloads for the Fibromyalgia Podcast.

[05:33]  TS — It’s now my pleasure to introduce our guest for today’s podcast, Dr. Melissa Congdon. I first met her back in early 2012, when she was a guest speaker for the support group that I was leading at the time. Over the last seven years, she and I have shared several patients with each other, both referring people to each other, but also working with one person — both of us working with the same person — and we have really developed a mutual admiration for each other. I love working with clients who have a good doctor on their team, because I know they can get results so much more quickly.

And I know that Dr. Congdon feels the same way about having her patients work with a Coach. We really have come to appreciate each other’s work.

[06:30]  TS — She is currently in practice in the California Bay area. You can find her online at MelissaCongdonMD.com. And, again, we’ll have that link in the show notes. 

Dr. Congdon is actually a fibromyalgia patient herself, with her own story that is very similar to all of ours. She was forced to retire from her general pediatric practice eleven years ago, due to severe fibromyalgia symptoms. I’m sure many of us can relate to that, where we’ve had to change the work that we do because of our fibromyalgia. She tried using a variety of therapies, and her health markedly improved. She was able to return to practicing medicine just twenty months after her diagnosis — less than two years after her diagnosis.

When that happened, she decided to devote her medical career to the diagnosis and treatment of fibromyalgia, including teaching patients how to reduce their symptoms with the use of the Guaifenesin Protocol. Now this podcast episode, she does talk a little bit about the Guaifenesin Protocol, but that is not our main topic today. We will have her back at some point to talk about that a little bit more. If you’re interested in that work, she is the producer of the documentary Fibromyalgia, Getting Our Lives Back, Success Stories on the Guaifenesin Protocol. She was actually diagnosed and trained by Dr. Paul St. Amand, and we will also link to his book [affiliate link] in the show notes.

For those of you who are interested in checking out more of that, just go to FibromyalgiaPodcast.com/16 to get all of those resources and information. Also, make sure that you stay tuned after I complete my interview with Dr. Congdon for a little recap, as well as a few extra goodies and details on upcoming episodes, and a few other things that we’re going to have for you related to this podcast interview.

[08:53]  TS — All right. Welcome! Thank you so much for being here, Dr. Congdon.

[08:57]  MC — Oh, thank you, Tami. It’s wonderful to be here.

[09:00]  TS — I really wanted to talk about this subject for several reasons. I have had several clients who have noticed some things in their children. One person in particular that I’m thinking of is actually one of my coaches. Her daughter has fibromyalgia. She would notice that she (her daughter) was tired or complain about things hurting, and didn’t really give it a whole lot of thought until one day… It was spirit week at school. Her daughter got all dressed up in all of her spirit gear and was so excited to go to school. When she went out to the car to drive her daughter to school, her daughter was sitting in the driveway crying because she was so tired and she hurt so much, and she couldn’t do it, and she wanted to do it. [For my coach, that] was a big key that, okay, maybe there’s something else going on. 

I’m sure you’ve seen a lot of things like this with juveniles having fibromyalgia. So, I would love to hear some of your stories on that.

[10:09]  MC — Oh, thank you. Yes. Well, first of all, juvenile fibromyalgia does exist, and the Mayo Clinic reports 2 – 6% of school aged children have it. If we take a look, very conservatively, 2% of the population is 14.8 million kids in the U.S. that have fibromyalgia — and this is school age, from kindergarten through senior in high school. If it’s diagnosed before puberty, it’s half boys, half girls. If diagnosed after puberty, it’s more like 70% women, 25% men. There’s a strong genetic component. If you have a first degree relative with fibromyalgia, then you are 8-1/2 times more likely to have this syndrome yourself. And 8-1/2 times is huge. If you take a look at the other genetically-related syndromes, like lupus or rheumatoid arthritis, you’re two to three times more likely, if you have those first degree relatives. So 8-1/2?!!  [It’s a lot!]

[11:22]  TS — Yes — and for people who might not understand “first degree relative”, we’re talking about parents, daughters, brothers, sisters. Just one degree of separation from you on the family tree.

[11:35]  MC — Exactly. Most of the time it’s not the pediatrician that makes the diagnosis or realizes that the child could have fibromyalgia. It’s the parents. 

If the parent has fibromyalgia or if they have a sister or brother with fibromyalgia, they can recognize the symptoms that either they had or their siblings had in childhood that weren’t picked up as fibromyalgia and then often worsened over time before the diagnosis was finally made. Yes. 

So, the typical scenario I see in the office is, I’m seeing an adult patient that has kids. We’re talking about their symptoms.

[12:27]  TS — The adult’s symptoms?

[12:28]  MC — The adult’s symptoms, yes. And the adult will have this “Aha” moment, and they’ll look at me with a worried and maybe sad expression and say, “I think you need to see my son or daughter” — or both — as they’re remembering these symptoms that they had and how they’ve been seeing these symptoms in their kids. 

This is where the issue of “labeling” comes in, because some parents are afraid of going to a specialist to get their child diagnosed, because they don’t want them labeled. But, the research on adults and getting a fibromyalgia diagnosis shows that when they’re properly diagnosed, they actually use fewer resources. They don’t need to go to the doctor as much because they’ve been diagnosed. They developed a treatment plan and then they work on getting better.

[13:39]  TS — Absolutely. We definitely know that getting an early diagnosis and early treatment makes a huge difference. I see that in my clients. When I’m talking to someone who has had fibromyalgia for fifteen or twenty years, they’re so much sicker, to be honest, because there are so many things that have gone unaddressed. Right?

It’s a terrible analogy, I know, but if you have cancer and you’re diagnosed early, there are so many things we can do versus if we let this go. People aren’t thinking about fibromyalgia in that way, and I think that’s because a lot of the medical establishment thinks, “Well, there’s not much we can do. So, what difference does it really make?”

[14:22]  MC — Which is not right. Pediatric fibromyalgia is so treatable. Kids respond so quickly and so well to treatment that it just amazes and delights parents and really gives the child an opportunity for a more full life. So that’s really the goal, to make the proper diagnosis as early as possible.

[14:56]  TS — Absolutely. 

One of the things that I know I ran into when I was talking with clients — and you and I talked about this before we started the official interview — but I had a client with a pretty young kiddo. I think she was around four or so, and she noticed that her daughter would say things that she was saying and wasn’t sure if… Does she really hurt? Is she saying, “Oh, that hurts,” because mommy says, “Oh, that hurts,” when I hug her? 

You know, we learn by copying, right? How we speak, how we walk, how we act, everything we learned by watching our parents. And, so, is she learning that a hug should hurt? Or is she saying that because it actually does hurt when I hug her? I would love to hear your thoughts on that.

[15:49]  MC — Well, what I recommend is for parents to really observe their children in settings where they are maybe with other children, with groups of kids, maybe during sports activities for instance. I produced a documentary that’s on YouTube about my patients. There were two little boys in the documentary that played soccer. The parents noticed that the boys in some games and some practices had a hard time keeping up.

MC — Pediatric fibromyalgia and fibromyalgia in adults, you know, our symptoms are variable. We have good days and bad days, and it’s the same thing with kids. There might be days where these boys could… They would do great in a game, and they would keep up, and they would score goals. And there were other games where one or both of the boys just couldn’t make it through the game and had to sit out. 

I saw that in my daughter when she was 13. She was running cross-country and the first three meets she did great. Then the next three meets she just couldn’t keep up. She started complaining of dizziness and moodiness. Now, moodiness can be normal in a 13 year old girl…

[17:34]  TS — Not at all! lol

[17:36]  MC — She’s pretty mellow. But, luckily, I had the benchmark of her three cross-country meets, where she had done really well, and I knew she wasn’t sick. She didn’t have a virus or anything like that. She wasn’t anemic, and all of a sudden she just couldn’t keep up.

[17:57]  MC — When parents can look for objective signs, that’s really important. And with sleeping — Does your child wake up crying or feeling fussy without illness or a known cause? Because that could be due to pain. Do they come home from school some days exhausted, some days not?

And do they — this is such a classic one:  homework. 

So, fibro fog in kids… You can tell the fibro fog is going on if, let’s say, a child has a spelling test, and the night before the spelling test you help them, and they absolutely have all of the words memorized, and the next morning they can’t spell any of them or most of them, that’s pediatric fog. The parents know that the night before they knew them. And most kids with fibro fog… it’s distressing to them because they want to do well in school, and they want to please their parents. But then…

[19:16]  TS — They know it, too. I bet the kids are frustrated. I know I am, as a person with fibromyalgia. That’s actually one of my key warning signals that I need to give my brain a break, is I start spelling things phonetically. Like phonetic would be with an f instead of a ph.

[19:33]  MC — Well, it should be! lol

[19:39]  TS — No, I love that you used that example of a spelling test, because that’s exactly what happens to me. So, I can totally see that.

[19:49]  MC — Yes. And most kids want to do well in school because they get praised for that. So that’s something to look for. 

For parents to really try to find situations where they don’t think there’d be secondary gain that their kids are having — and I rarely see that anyway. Most kids just want to be kids, and they want to have fun, and they enjoy school, and they want to participate fully.

[20:24]  TS — Let’s talk a little bit about… I know you and I mentioned, again, before we started the recording, about some of the differences in diagnosing fibromyalgia in juveniles, and the diagnostic criteria and some of those things. 

So real quick, I’m just gonna pause and remind everybody, we do have full show notes for this. We’ll have links to all of the things we mentioned. The documentary that Dr. Congdon mentioned, we’ll be sure and have that in the show notes. 

I also want to refer you back to Episodes 4 [What is Fibromyalgia? (Part 1)] and 5 [What is Fibromyalgia? (Part 2)] of this podcast. That’s where I talk about what fibromyalgia is and how it’s diagnosed in adults. In this episode, just to save some time, we’re only going to talk about the differences and we’re going to talk about diagnosis in juveniles. But, if you need a refresher on the current info for adults, you can go back and look at Episodes 4 and 5. We’ll have links to that for you also.

[21:22]  MC —  Excellent. Thanks Tami. 

So, in 1990, the American College of Rheumatology defined the two major diagnostic criteria for classifying fibromyalgia in adults. 

  1. First was a history of widespread pain for at least three months that involves both sides of the body, above and below the waist.
  2. The second criteria was pain in 11 of 18 defined tender points. 

In 2016, the American College of Rheumatology adopted new fibromyalgia diagnostic criteria because their experience showed the tender point exam was inaccurate. 

However the 1990 criteria remains for children.

[22:14]  TS — That’s just crazy to me. Why? Why would you update one and not the other?

[22:20]  MC — I know. Well, we’ll talk a little bit more about that later, and I have a story that will really explain it. 

The diagnostic criteria… You must have all three of the following: 

  1. Generalized musculoskeletal aching at three or more sites for at least three months. 
  2. Absence of an underlying condition or a cause. That makes sense, right? If a child was just in a car accident, of course, I can have pain. Normal test results — of course anemia, cancer and things like that. You want to just be dealing with fibromyalgia. 
  3. And five tender points. 

And then three of the minor criteria must be present, which is: 

  1. Chronic anxiety or tension
  2. Fatigue
  3. Poor sleep
  4. Chronic headaches
  5. Irritable bowel syndrome
  6. Subjective, soft tissue swelling
  7. Numbness
  8. Pain modulation of physical activity
  9. Pain modulation by weather factors
  10. Pain modulation by anxiety or stress.

So, you have to have all of the major and three of the minor.

[23:42]  TS — Wow.

[23:43]  MC — Yeah. So, this is an issue for a lot of reasons. The most troublesome is the tender points, because that was really only made to be a research tool, and, you know, tender points are very specific. You have to be pressing down with four kilograms per unit of force on specific parts of the body. Also, you know, people with fibromyalgia, we have good days and bad days.

[24:19]  TS — Right! If somebody’s checking your tender points on one of your good days, I bet you respond a whole lot different than on a bad day.

[24:27]  MC — And, there are children and adults with high pain tolerance, and oftentimes as I’m examining somebody, and I can feel a lot of muscle spasm, and they’re not saying anything. I’ll say, “Do you need to use anesthetic when you get a filling?” Or, “Did you have any anesthesia when you had kids?” And a lot of times they’ll say no. Right? So, these are people with fibromyalgia that have high pain tolerance, and they are not going to have any tender points or very few.

In my experience, that minor criteria, which we just described… I see poor sleep and fatigue very frequently in pediatric fibromyalgia, chronic headaches, bladder issues like painful urination, vaginal pain, rashes, rashes in general, and abdominal pain, and fussiness, irritability, and being overemotional. Wouldn’t you be, if you had poor sleep, fatigue, chronic headaches, abdominal pain and urinary tract issues?

[25:41]  TS — Totally!

[25:42]  MC — Yeah. As I said, symptoms come and go. That’s why I think it’s very difficult for many specialists in rheumatology and neurology who are diagnosing kids. They are missing a lot of kids with fibromyalgia.

[26:08]  TS — Well, definitely. And, I think, too, just thinking about myself as a kid, as you were describing those minor criteria, I could have checked a lot of those boxes. But, at the same time, a kid complaining of a stomach ache in the morning when it’s time to go to school, your first thought isn’t fibromyalgia.

[26:30]  MC — Absolutely. I think that’s why parents are quiet when they have the “Aha” moment because they, as opposed to pediatricians, are with their kids 24/7, some of the time, and they have years of experience, and they see a pattern of pain. I see a pattern of fatigue. I see things that are worsening with my kids: sleep, headaches, things like that. So, that’s why it’s parents rather than pediatricians that are often the first ones to really sound the alarm in order to, “Hey, let’s get the ball rolling to see if my child has fibromyalgia.” 

And… I’d like to talk about growing pains.

[27:27]  TS — Yes, we totally should. I totally forgot about that.

[27:33]  MC — So… there’s no such thing as growing pains. It’s an absolute misnomer. Normal growth should not hurt. Growth doesn’t hurt. I mean, think of… A baby doubles its height in the first year — or length because they’re not standing up — and it doesn’t seem to bother them at all when they’re growing. And growing pains happen before that huge pubertal growth spurt. There has been a high correlation between growing pains and later fibromyalgia.

[28:13]  TS — Which makes perfect sense.

[28:16]  MC — Absolutely. Because, yes, this is a time where there is chronic pain in the legs. 

So, what I do is, I use the example of the Golden State Warriors, the basketball team in San Francisco. These men are at least six feet tall. Some of them are almost seven feet tall. If we had the opportunity to interview them about their childhood, would they have a higher incidence of growing pains than the rest of us? But they didn’t have more pain.

So, the takeaway is, if your child has growing pains, it increases the likelihood that they have fibromyalgia. If they don’t have growing pains — like I didn’t and I have fibromyalgia, and my daughter didn’t and she has fibromyalgia — it doesn’t mean you can’t have it. But, if you do have growing pains, that is something to really think about in all of the other symptoms.

[29:23]  TS — I think that’s one of the things we talk about just in general with fibromyalgia — is having an overactive pain response. Right? 

I remember when I was a kid, we were at my grandpa’s house and there was three feet of snow. I was a kid, so it felt like it was up to [my neck]. It probably wasn’t, but it, you know, it felt like that. I had tripped and fallen into the snow, and one of my gloves came off, and the snow hurt so bad. I literally couldn’t get up because the way that I fell, I needed to put my hands down to get myself upright, and I couldn’t touch the snow because it hurt so bad.

[30:07]  MC — Oh, yeah.

[30:08]  TS — So, that’s a good example of… okay, that’s not a normal response for someone to have. Snow shouldn’t hurt to that degree.

[30:19]  MC — Absolutely. It’s the heightened pain response that was present even at your young age. So this is what parents can do, they become aware of the heightened pain response and fatigue and poor sleep, and that’s when they can bring it to the doctor’s attention.

[30:47]  TS — Yes. I love that. What is currently being offered treatment-wise? Let’s say you do notice this in your child, and you do get a diagnosis. What is being offered treatment-wise for juveniles? For pediatrics?

[31:03]  MC — Yes. Well, as the Mayo Clinic says, they recommend, “A multidisciplinary approach that incorporates clinicians, psychologists and rehab specialists, that offer a combination of pharmacological, cognitive behavioral and physical interventions, along with patient education.” And then they talk about medications, and, “Medications can help reduce the pain of fibromyalgia and improve sleep.” But, then, “Data on the use of medications in the treatment of juvenile fibromyalgia is limited.” 

Although the Mayo Clinic says that these medications — the medications that benefit adults with fibromyalgia — can be used in children and are sometimes effective, the common choices are antidepressants such as Cymbalta, Savella or Prozac, pain relievers such as Tylenol, Advil, Aleve or Tramadol, and anti-seizure drugs such as Gabapentin or Lyrica.

[32:10]  TS — Which is basically what we do for adults. Right? So, they didn’t really give us anything. I mean, not that I disagree with anything there, but that also wasn’t very helpful.

[32:20]  MC — Yes. Especially because the side effects of these very, very strong medications — the anti-depressants and anti-seizure drugs — are more prevalent in children. I have seen 12-year-olds on Lyrica and Cymbalta. And that absolutely is the parents’ and the child’s choice as they get older. But that would not be my first choice of treatment. It’s also important to remember that lifestyle choices, such as trying to reduce stress, get enough sleep, exercise regularly, pace yourself, and a healthy lifestyle, are super important for children, as well as adults.

[33:17]  TS — Absolutely. Teaching things like mindfulness-based stress reduction. Or you can learn pacing as a kid, right? There are a lot of those things we do as adults. The wonderful thing about children is that they learn. They’re learning and growing at that age, so they heal more quickly. They pick things up and learn things more quickly. So, it’s a great time to teach them those skills, particularly the lifestyle skills that are going to serve them as adults. Which is another reason to get your diagnosis early, so that you can start learning good self-care.

[34:02]  MC — Absolutely. 

But the problem with using the strong antidepressants and anti-seizure drugs is they may not work or they might really sedate the child. I have experienced this with a lot of young people. 

There was a teenage patient of mine who was an excellent student. He was looking forward to going to college, but he became so fatigued he was sleeping twenty hours a day. When he was awake, he had extreme muscle pain and brain fog. He went from being a star pupil to needing to be homeschooled, and he was giving up the dreams of going to college. 

He was put on antidepressants. He was put on stimulants. They didn’t have any effect. He tried physical therapy, acupuncture, a light therapy lamp, and nothing was helping. So, the problem with that is that when these treatments don’t work, children feel ashamed and they feel blamed. Like, “Can’t you just try harder? You want to go to college. You want to go to college.”

[35:23]  MC — When I saw this young man, and I treated him, and he got better, I realized that he hadn’t been diagnosed with fibromyalgia by pediatric specialist. He had been seen in a large pediatric medical center in San Francisco. 

So, I called them. I wanted to find out what they do with pediatric fibromyalgia patients. I spoke with one of the fellows. “Fellows” is like, you’re almost to the the head person. You’re not a resident, you’re in between the attending and the resident. And I said, “Hey, we share a patient. He has fibromyalgia, and he’s doing a whole lot better. He came to see you a couple of years ago, and I just want to know… When you see kids that you think have fibromyalgia, what do you do?” 

And she said, “Oh, we never call it fibromyalgia. We call it a pain amplification syndrome. And then we send them back to their pediatricians for treatment because, you know, so much of it is in their heads.”

[36:45]  TS — Now, you know, I have heard — I hate to say it, but I have heard — fibromyalgia people say this about their own kids, about not wanting to label them, about not wanting to set them up. 

And, yes, our brains are powerful. What we think does influence how we feel. There’s no question about that. But at the same time, if that story that you just told had been about an adult, we would be horrified. Why are we not as horrified about this happening with our kids?

[37:14]  MC — Right! Because it’s fairly standard in many hospitals. And I think in my pediatric training we had two sentences about pediatric fibromyalgia. 1. Yes, it exists. And 2. It can be challenging to treat.

[37:48]  TS — Those were your two sentences.

[37:51]  MC — That’s right.Those are your two sentences. Okay, go out and diagnose!

[37:53]  TS — Oh my.

[37:54]  MC — I was a community pediatrician for almost 18 years, and I remember referring a couple of kids to a local fibromyalgia specialist, but I didn’t really know very much about it. Then, I had to retire because of my own severe fibromyalgia symptoms. When I got better after twenty months, I returned to medicine, this time as a fibromyalgia consultant. I now have four or five of my previous pediatric patients who developed fibromyalgia and I’m able to look back: “Oh! The rashes you had. Oh! That what we call CRAP: Chronic Recurrent Abdominal Pain. Oh! That was the start of your fibromyalgia. Your chronic headaches.” 

So, I’m able to look back on the symptoms that I hadn’t been able to put together yet, because they hadn’t fully developed, until the kids came to me and they were very symptomatic. And with my knowledge of fibromyalgia, it was easy. Yes.

[39:26]  TS — Wow. That’s amazing. The other thing, too, that we didn’t mention when talking about some of those medications that I would be curious to have you say a couple of words on, is the fact that children are still developing at that point. When we start messing with things like our neurotransmitters and all of those other things… Like medication in general with children when they’re developing is kind of not a good idea. I mean, we use it when we need to, but we also don’t want to mess things up, so to speak. Isn’t there a lot of warnings about using antidepressants in children as well?

[40:12]  MC — Yes. And, so, it’s the psychiatrist and the pediatric neurologist and the rheumatologist’s discretion if they want to use these medications. I believe the lower limit is age 12, and so it’s really not used in children younger than that. But, yes, it really worries me, because of the developing brain and because of the sedative effects. When a child is in junior high and high school, and where the amount of homework and the amount of tests is really huge. So, that’s why trying to really expand the tool box and take a look at a lot of different fibromyalgia treatments is what’s very exciting for me and what I use in my pediatric patients.

[41:18]  TS — Which is a perfect transition here, because I was just thinking to myself as we were talking about the negatives of using medication, is that we’re kind of being contradictory so far. We’re saying you need to get a diagnosis early and you need to get treatment early. And we’re also saying, but these treatments kind of suck. So, what’s the answer? What do we do? Tell us.

[41:44]  MC — Yes. I had the great good fortune of being examined by endocrinologist and fibromyalgia specialist, Dr. Paul St. Amand at Harbor UCLA. Dr. St. Amand is 92. He still works full-time. And, in the 1980s, as he was seeing a lot of people in chronic pain who turned out to have fibromyalgia, he realized that all of them — us — have muscle spasm and swollen muscles, tendons and ligaments throughout their bodies, which he called nodules. In children, 96% of children have swollen muscles, tendons and ligaments and have muscle spasms. This is a way that I can diagnose a child accurately with fibromyalgia who doesn’t yet meet the major and minor criteria.

[42:53]  MC — Because with the Mapping Exam, as he calls it, where we are checking for the swollen muscles, tendons and ligaments, it doesn’t have to hurt — just has to be there. So, he’s found — and I have seen this in my past almost nine years of doing fibromyalgia consulting — that 96% of children with fibromyalgia have the muscle spasm and swollen muscles, tendons and ligaments on the left side of the neck, on the top of the left shoulder and the shoulder blade, and 84% have the lumps on the right side as well, and 75% have lumps on the front and outside of the left thigh. I’ve examined hundreds of children over the past eight plus years, and it’s just incredibly useful because if they have the muscle spasm and the swollen muscles, tendons and ligaments, I have made the diagnosis of fibromyalgia. It can be decades earlier. I mean, if you think back to your own…

[44:05]  TS — Oh my gosh. Yes.

[44:07]  MC — And that you might have been diagnosed as a teen as opposed to maybe in your 20s or 30s. So, the advantage of that is that you get an accurate diagnosis early, not only to prevent the child from missing out on going to the college of their choice and participating in the activities, but they respond so much faster to treatment. The treatments that Dr. St. Amand found to be incredibly useful is called the Guaifenesin Protocol. He found that people with fibromyalgia, when they’re put on guaifenesin… It’s an over the counter expectorate. It’s sold as Mucinex. It’s FDA approved for kids 2 and older. If you look at the kidney excretion of phosphate, it increases six times. So, even though our kidney function is normal, we might be a little sluggish in excreting phosphate. You put these kids on guaifenesin, and it’s amazing to watch how quickly they get better.

[45:30]  MC — One child who had to be carried into my office because it hurt her too much to walk… She couldn’t wear pants because her leg hurt. After 17 days on guaifenesin — and now results may vary — her dad said that she woke up and she was able to run around the house playing. 

So, when I make a diagnosis, I give people the choice, and I talk to them about guaifenesin. Russell, the patient I was talking to you about, who was told he had the pain amplification syndrome, he went on guaifenesin. After a year, his pain was greatly diminished. He’s not on pain medication. He was much less fatigued, was able to exercise and interact with friends, and he’s just graduated from college.

This, for me, when I tell them, when I tell parents about the guaifenesin option, it helps them not feel as badly about passing on their genes. This was with my daughter when she was 13, when she was diagnosed. I said, “Gosh, I am so sorry that I passed this onto you.” And she said, “That’s okay mommy. You got better on guaifenesin and I will too.”

[47:08]  TS — Words from the mouths of babes. Right.

[47:12]  MC — She did. So, it’s nice to have that option. I think I have to tell parents that, especially when I make a diagnosis in a young child. This means that the child has had fibromyalgia maybe since they were a toddler. Let’s say they might be five years old now. The parent might not know what their child’s personality is really like.

I was seeing a mom in follow up this past week, and I asked her how her five-year-old daughter was doing. She’d just been on the guaifenesin protocol for a little while. She said, “Dr. Congdon, you were right. It’s like I’m meeting my little girl for the first time. She lets me hug her, and she likes to snuggle with me when I read to her. I used to think she was just one of those kids that didn’t like the touchy-feely stuff, and now I realize she was in pain, and that’s why she didn’t want to be touched.” 

So, I mean, how wonderful is it for parents to be able to have their children feel well enough that they can really enjoy their time as children and not have pain and fatigue really interrupt their childhood and their later years?

[48:47]  TS — Absolutely. Oh my goodness. 

I would also love to have you talk a little bit about the results you get and your success rate in working with kids, because it’s pretty impressive. I mean, this isn’t a magic cure. It’s not like all you have to do is take this and that’s it for the rest of your life, you’re fixed, and that it works in everybody, but your success rate is still pretty astounding. I would love to have you share that.

[49:16]  MC —  Yes. My success rate in helping the 25 and under age group feel substantially better with fibromyalgia on the Guaifenesin Protocol is 95%. With that other 5%, I wonder if maybe they had another condition going on that had not yet been diagnosed that kept them from feeling well. It’s just in the kids 25 and under, they just respond so well. I mean, adults respond very well too, but it’s almost a given in children that they’re going to feel better.

[50:02]  TS —  Yeah, that’s so fascinating. And with adults, what are you finding, just for comparison sake?

[50:09]  MC —  If I take a look at a year, most people I care for with fibromyalgia at a year, they’re feeling substantially better, but I’m not just using guaifenesin. I’m talking about diet, getting consistent aerobic exercise, proper hydration, mind/body therapies. So, it’s hard to separate that out. But I would say to you, go to… In Seattle, where you are, why don’t you go, just for instance, to an adult neurologist or rheumatologist and say, “Oh, after you’ve treated your fibromyalgia patients for a year, what percentage of them are feeling substantially better?”

[51:01]  TS —  That’s funny because last week I did go to a new neurologist here, and I was talking to him, of course, about what I do, and I think he asked me about three times, “So, you don’t have fibromyalgia pain anymore?” I’m like, “Not really. No. That’s actually what I do.” So, I kind of know his answer to that question just by how he responded to me talking about how I feel with my fibromyalgia. It’s kind of unheard of, in the adult fibromyalgia world, to get better, like at all, period. I know we’re here talking about juvenile fibromyalgia, but that is why we’re talking about juvenile fibromyalgia. Let’s help these kids before they get to be adults and enter that world where getting better is an anomaly.

[51:56]  MC — Yes, absolutely. You hit the nail on the head. It takes a lot more work for adults, and with your awesome coaching and all that you have done personally to help you feel better. It’s what I do with my patients. And, personally, you know, it’s not just one thing. It’s a bunch of things to really maximize the treatments that help us feel better. 

And kids? It’s pretty much easy. I just make sure that they drink water because a lot of them have headaches when they come home from school — ven kids without fibromyalgia get headaches — and take your guaifenesin, chances are you’ll get better.

[52:43]  TS — Right. So, you with your kids, you don’t have to do quite all the same dietary changes for instance?

[52:53]  MC — Ah, that’s a good question. So, yes, Dr. St. Amand found that 30 to 40% of adults with fibromyalgia have carb tolerance, where their blood sugar really fluctuates when they eat certain types and certain amounts of carbs. He has found a list of foods that really keeps the blood sugar steady. If people go on that food plan, it really helps give them more energy and sleep better and have a more stable mood. 

So, I do ask children or parents of children that same questions about fluctuating blood sugar and, yes, every now and then I will get kids who really need to have frequent high protein, high fat snacks, and really just have an exaggerated response to sugar where they are just bottoming out. Every now and then, I’ll see a teenager who really does better if they do go on the special food plan. But that’s more rare in kids. So, it’s a case by case.

[54:08]  TS — Yes. Because somebody who is an adult with fibromyalgia, I can imagine that this is part of the resistance to getting your child diagnosed. I know all of the things that I have to do. I pretty much don’t have body pain these days, but there’s a lot that I do to make that happen. Right? There’s a lot that I do. 

So, you think about… If I get my child diagnosed, I’m giving them not only my illness, but I’m also giving them this burden of all of these things that they have to do. I just feel like that’s a huge part of the resistance in taking your child to be diagnosed, is that you’re almost sentencing them to this particular kind of life, not just the pain, but also the life of always having to be aware of your choices, and always having to watch your energy and what you eat and what you do and how you sleep and all the things. Right? But what you’re describing is a much different scenario.

[55:16]  MC — A much different scenario. And, of course, in order to do the perfect study, I would have to do the identical twin study where they both had fibromyalgia and one went on guaifenesin and the other didn’t. But I can tell you in the hundreds of kids I’ve seen over the past eight plus years that they become really pain-free, active kids who really just don’t have any symptoms. They may get tired a little bit more easily, but they really don’t have any restrictions.

[55:59]  TS — That’s wonderful. 

So, for the person who is listening to this — who is most likely an adult who is listening, rather than the child — what advice would you give? What steps would you give to them if they’re listening to this episode and there are a lot of things that are light bulbs going off in the head, boxes being checked. Like, “Okay, this might be something we need to check out.” What would you recommend that they do? What would the next steps be?

[56:31]  MC — Well, I would recommend that they would start making a list of the things that they notice. The list needs to be something like this: What is the trouble that they’ve noticed, whether it’s fatigue or pain, and is there a virus at the same time, or what is the whole scenario, so the pediatricians and, or specialists will know. And then it is always wonderful for doctors to see video.

[Side note: we have created a special worksheet to help you create this list. Sign up to receive a copy of the worksheet here.]

[57:12]  TS — And that’s interesting. I would not have thought of that.

[57:14]  MC — When I was a pediatrician I loved to see video. Let’s say parents of my pediatric patient were worried that their child was having seizures or abnormal movement, or they might be having some trouble with obstructive sleep apnea or breathing trouble. I would have them do a videotape with audio of the child’s sleeping and of the child’s movement, because a picture’s worth a thousand words. So, in the situation where I was describing before on the soccer field, there could be a short clip of a game where the child was scoring a goal and keeping up nicely, and then the next game where you could see the child trying to keep up but was lagging behind.

[58:14]  TS — So, kind of like, “Here’s my kid on a good day, and here’s what I’m noticing on a bad day.”

[58:19]  MC — Exactly. And there’s no fever, and there hasn’t been a car accident, and there’s nothing else going on. And for the neurologists and rheumatologists and pediatricians that aren’t familiar with pediatric fibromyalgia, this will really help them, where it’s kind of like a month in the life of my child.

[58:47]  TS — Yes. I love that. I think too — just my troubleshooting, my Coach brain is working here — I would imagine that it would be super helpful to… Okay, I’ve noticed this one particular thing, right? Like, for instance, my client who had the daughter who said, “Ooh, that hurts”, to notice, but then make a specific point of noticing or watching for that when the child doesn’t know you’re watching.

[59:16]  MC — Absolutely. Yes.

[59:18]  TS — That’s what you were referring to earlier about there being a payoff. If that same activity is there when you’re all by yourself and nobody else knows, if you still say, “Oh, that hurts”…

[59:32]  MC — Do you remember when we were kids and our parents took out the video cameras. We all hammed for the cameras, right?

[59:40]  TS — We totally did. Yes.

[59:42]  MC — But now, kids are so used to being videotaped with our smartphones, that they really don’t ham as much — especially if you can videotape them in a situation where they don’t know they’re being filmed, like on the playground, on the soccer field, things like that. When they’re at home, and you’re kind of in another room, and you are watching, you can see them massaging their lower leg and doing things like that. It’s just so helpful for the pediatrician and specialists to get these little vignettes.

[01:00:32]  TS — I love that. Then, once they’ve made all these observations, is it best to just talk to their own fibro specialist or make an appointment to talk to the pediatrician? What is the next step once you’ve gathered this information?

[01:00:51]  MC — The pediatrician should be the first point of contact. That’s the doctor that knows the child best. Then, they can recommend a referral to a pediatric fibromyalgia specialist. In some areas there aren’t any, and in some areas there are pediatric fibromyalgia specialists. Patients are welcome to contact me or Dr. St. Amand because of the large number of kids we see. 

But the main point I want to make is, be your child’s advocate. Most kids don’t have the secondary gain necessity. They’re just trying to go through life and do the things they want to do and do the things that their parents want them to do. So, find a doctor that believes you and really wants to get these symptoms evaluated, and keep pushing until you find someone that understands what you’re talking about and really wants to work with you and your child in order to make a diagnosis and to really give you a wide tool box to choose from when you choose the treatment for your child.

[01:02:33]  TS — Absolutely. The more we know, the better choice that we can make. The more options we have to choose from, I think, the better, for sure. 

I also love that you pointed out being your child’s advocate. I think that it is so important that we — I mean, whether we’re talking kids or adults it doesn’t matter — but I think it is so important to go in from a place of, “I believe you” rather than going in with the idea of, “You’re lying to me.” Whether you are an adult or child, there may be a few in there who have ulterior motives, but by far the vast majority of us, we want to be believed. We want to be able to live our lives. We want to be able to do all the things

[01:03:29]  MC — We don’t get our jollies by making this stuff up.

[01:03:33]  TS — No. No. Fibromyalgia is not… If you were going to make something up, don’t choose this.

[01:03:47]  MC — Totally true. When I see that parent and child come in together, they’re a unit. They’re looking to share the child’s symptoms and child’s stories and get my input on the physical exam as well as the symptoms and a treatment plan. That works the best.

[01:04:16]  TS — Absolutely. Yes.

So, would you recommend… like, if I’m the parent of someone, and I’m starting to see some of these patterns. I’ve been making my observations. This might depend on the age of the child, but I’m asking as somebody who doesn’t have kids here. Would you have that conversation with your child first? Would you figure out a way to have a conversation with the doctor, sort of on the side, and say, “This is what I’m seeing. Should we bring the child into this?” How would you go about that?

[01:04:50]  MC — That’s your choice as a pretend parent, Tami. I saw an eight-year-old yesterday. The mom has fibromyalgia. She thought the eight-year-old daughter might, and also thinks her 14-year-old son might. She didn’t want me to say anything about fibromyalgia or anything about treatment to the child. She just wanted me to examine her. Of course, and, so, that’s what I did. But as the mother felt more comfortable, as time went on, and she could see that the eight-year-old was very comfortable being examined, being mapped by me, then she opened up to the child and said, “You know, sweetie, I’m wondering if you have what mommy has. And just the start of what mommy has, not all of the symptoms, and Dr. Congdon has been trained on how to know if you do have that, and she can give us choices of treatment.” So, I really leave it up to the parents. It’s their call. It’s their kid.

[01:06:07]  TS — Absolutely, and you know your child’s personality. Are they a worrier? Are they old enough to understand? How has their reaction been to your own illness? Because that’s part of it too, right? You don’t want to totally freak them out, especially if your symptoms happen to be bad. Right? You don’t want them to think, “this is automatically what my life is going to be.” So there’s a lot of factors to consider there.

[01:06:38]  MC — There are a lot of factors, but I found as the child gets older — and especially in the preteen and the teen — they know what’s going on. They know that there’s something wrong with them. They don’t know what it is, and sometimes their mind is spinning to a place that’s worse than fibromyalgia. You know, that they’re crazy, or that they’re dying, or all of these things, and many times, it’s a relief to hear the diagnosis of fibromyalgia and, “Okay, this is how we can treat it.” You can almost see the child exhaling. “Wow, you understand what I have, and you have a plan for me to get better.” Because, I think, parents don’t give kids enough credit for what the child is understanding and what the child is picking up about their own symptoms. They know it’s not normal.

[01:07:49]  TS — Absolutely. At the very minimum, they know “I’m not like other kids. there’s something different about me.” And that being different often doesn’t make us feel good. 

You know, if you’re having a child who is telling you first thing in the morning, “I have a stomach ache. I don’t want to go to school.” Regardless of what that reason is, there’s something there to explore, whether it’s just anxiety over school or stomach ache because they actually have fibromyalgia and it hurts and they’re tired, or they’re bored at school. There’s a reason there. There’s something there that absolutely should be explored.

[01:08:33]  MC — Yes. Or they have a sensitivity to milk and they’re having cramping because of that. You know, things like that.

[01:08:40]  TS — Absolutely. I think, too, one of the things that you said about the child starting to make their own theories as to what’s going on, it resonated with me when you said, “I’m dying”, because, I think, especially the younger that you are, you don’t know that there are all of these possible things out there. It’s kind of binary, right? Like there’s life and there’s dying.

[01:09:11]  MC — Yes. And, also, there are the normal kids that are able to finish the soccer practice and who are able to remember all the spelling words, and then there’s me.

And even, you know what it’s like, even if I really wanted to run that 5K with my best friend at a six-minute mile pace, I could not do that. Even if I really wanted to. And it’s the same with a child with fibromyalgia. Even if they really — and they usually do — really want to finish the soccer practice, where they’re doing the wind sprints at the end, their fibromyalgia prevents them from doing it, and they know they can’t do it. But until they’re diagnosed, they don’t know why. So, that’s where the spinning can happen.

[01:10:23]  TS — I also think it’s super interesting… You’re talking using soccer as an example — and I’m not saying that all introverted, book reading kids have fibromyalgia — but I much would have preferred to sit in the corner and read a book, because doing that other stuff didn’t feel good. It wasn’t even something that I could enjoy, even if I wanted to enjoy it, because it wasn’t enjoyable. We don’t like to do things that don’t feel good.

[01:10:57]  MC — That’s right. So, what we see is that often that child with fibromyalgia will reduce their activities to the more sedentary activities over time. Yes. I was a horseback rider. I let the horse do the work.

[01:11:20]  TS — Right! You could go on a hike and let the horse do the hiking.

[01:11:24]  MC — Yes, absolutely. 

I didn’t play the same sports as my brother and sister. That’s why it’s important for parents to take a look at all of these things, and see if there’s a pattern, a restriction, changing choices to more sedentary activities, an inability to really do certain physical things, and things in school, tasks, things like that, can be so helpful for the physician evaluating the child to know about.

[01:12:11]  TS — Excellent. Well, thank you so much for this conversation. 

I just want to let everybody know who’s listening to this, that we were joking around before we started recording that this was like a five year conversation. So, this is not meant to be a fully comprehensive, everything you need to know about juvenile fibromyalgia. This is just meant to be a starting place. 

I would love to hear from those of you who are listening, if you want more on this topic. There’s obviously a lot more Dr. Congdon can talk about. There’s also, I have one Coach in particular right now, who coaches juveniles with fibromyalgia and their parents. So, there are a lot of ways that we can have this conversation. I have Coaches who were diagnosed young who I’m sure we could have on, to talk about their experience. There are a lot of ways we could go, and I would love to hear from you guys if this is something that you would like to hear more of.

[01:13:15]  MC — Excellent. Well, thank you so much, Tami. I love seeing all fibromyalgia patients, but being a pediatrician, I do have a special spot in my heart for the pediatric patients with fibromyalgia, and I love to watch them feel better and really thrive. So, thanks for giving me an opportunity to talk about it.

[01:13:39]  TS — Absolutely. I will include in the show notes the link to your documentary. I’ll also include a link to Dr. St. Amand’s book [affiliate link] because I know that’s a great resource for a lot of people. 

Would you also mention how people can get in touch with you? I know one of the cool things about you as a fibromyalgia specialist is that you can consult long distance. People don’t have to go to San Francisco. Obviously, you can’t do an exam on them long distance. That would be a trick! But, would you share for people who are interested in reaching out?

[01:14:20]  MC — Certainly. They can contact me through my website, and it’s MelissaCongdonMD.com, and there is a contact, a little icon. I offer complimentary ten minute consultations, and I also offer thirty-minute and sixty-minute phone and Skype consultations, and that’s where we can really get to the meat of the matter. A half-hour consultation or an hour consultation is where parents can really give me that history of what they’ve noticed with the child and get my input on what I think that next step should be.

[01:15:04]  TS — Excellent. I will include that link in the show notes for you guys. 

If you’re listening to this where you can’t jot it down, just remember to go to a FibromyalgiaPodcast.com. This is episode 16, so it’s FibromyalgiaPodcast.com/16 and you’ll have all of those links and notes there. So, thank you again, so much. Any final thoughts, advice, suggestions?

[01:15:32]  MC — I think that this has been so wonderful to really explain pediatric fibromyalgia and demystify it, and to help parents understand that it’s so treatable that they don’t have to be scared.

[01:15:51]  TS — Absolutely. I love that. That’s actually my mission in the world, to actually make it that way for everyone who’s diagnosed. Instead of being told there’s not much we can do to help you, to be told, “You’ve got fibromyalgia, but here’s what we do,” and have it not be a big deal.

[01:16:15]  MC — Exactly. It’s not complicated. And you and I support our patients and families.

[01:16:20]  TS — Yes. Which is a huge thing, I think, that is definitely missing in the majority of the medical world out there, is the support to actually make the changes that are necessary, and to follow through on the things that need to be done in all those areas, both the treatment areas, but also the lifestyle areas, that mindset areas, and making those shifts. So, yes, thanks for pointing them out.

[01:16:46]  MC — I think that you and I have that special, let’s say “qualification”, because we have fibromyalgia. We understand, and we know what it’s like. Obviously we don’t have all of the symptoms that our patients and clients have, but we get it. We know that it’s real, and you and I, since we’ve recovered so well, and we know so many of our clients and patients that have too, we have that experience and expertise. So, it’s really lovely to be on the podcast. Thank you.

[01:17:29]  TS — Oh, thank you so much for being here. And, everybody, tune in, keep listening. This is the end of the interview, but I’m just going to do a little quick recap after this, and give you a little bit more information on some of the upcoming episodes. So stay tuned. We’ll have that in a second. Thanks again.

[01:17:50]  Thank you, so much, for listening to this last episode of the Fibromyalgia Podcast and my interview with Dr. Melissa Congdon. I hope you found that as helpful and educational as I did. 

We actually talked a little bit after I ended the recording, about how much she talked about that reminded me of my own childhood, and there’s no question in my mind that I would have been one of those kids who could have been diagnosed probably even before I was a teen. So, I hope this was helpful. I just wanted to remind all of you that you will find all of those resources at FibrobromyalgiaPodcast.com/16. We will have the links to the Dr. Congdon’s documentary. I will include a link to the book written by Dr. St. Amand [affiliate link], which describes the guaifenesin protocol that she mentioned in this episode.

[01:18:46]  We’re also going to put together a worksheet for you guys. I am actually going to have that out there for you to download as well. You might remember in this episode, Dr. Congdon talking about making a note of the observations you see in your child. We’re going to make you a worksheet to make that super simple for you to fill that out and take when you go into your pediatrician to talk about your child. And we will have all of that out there on the website and upcoming episodes. We’ve got a bunch of goodies for you. [Sign up here for the worksheet.

[01:19:24]  We’re going to be talking… I’ve had a lot of questions come in as part of the Ask the Coach, the “Dear Tami” questions, a lot of questions lately about using CBD oil for fibromyalgia. So, we are actually going to be doing an episode on that coming up here in a few weeks [Episode 18], and that is going to really be a comprehensive overview.

[01:19:51]  We’re going to start from the standpoint of, What is CBD?, and How does that differ from marijuana?, because it IS different. Those two terms mean different things. So, we’ll be discussing them. We’re also going to be talking about a lot of the research that’s being done on the use of CBDs for treating fibromyalgia. We have that coming up. 

We also have our Ask the Coach episode coming in episode 20. Since I am doing a whole episode on the CBD questions I’ve been receiving, I am still looking for questions to answer as part of that Ask the Coach episode. Just go to FibromyalgiaPodcast.com. You’ll see the Ask the Coach option to submit your question under the contact menu.

[01:20:44]  We are also going to be discussing motivation and what to do when you are faced with all of these things you need to keep doing to maintain your health, and you just don’t want to anymore. You don’t get a vacation from fibromyalgia. So, we’re going to be talking a bit about motivation.

[01:21:04]  I also have an interview coming up with Dr. Jarred Younger. If you are familiar with the research that’s being done right now on fibromyalgia, he has done a lot of research, including the big observation that there is inflammation in the brains of those of us who have fibromyalgia. We’re going to be interviewing him in an upcoming episode, talking about his research and just a lot of other goodies for you as well. 

So, stay tuned and remember we always have those resources for you out there at FibromyalgiaPodcast.com. Bye!

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